Barthe St. Clair here. Thought it was time to update our lives with you, so you can know what is going on with us.
We live in Palo Alto, California: we, my husband, Wilbur and our three amazing daughters: Evanescence Michelle (13), Happiness Rose (11), and Bitsy Maureen, our youngest, who is 8 years old. The fact that Bitsy is still with us a year later is nothing short of a miracle.
Doctors say Bitsy is dying; however, her will to live is extraordinary. She has more courage in that broken, little body of hers than most adults possess in their entire lifetime. I wouldn't put it past her to live the doctor's predictions: she's outlived them by three years.
Doctors said Bitsy wouldn't live beyond the age of five. She's now eight.
Bitsy has cystic fibrosis. She is prone to serious lung infections; some have been so bad, she's had to go into the hospital. Bitsy has problems absorbing certain enzymes in her system; she has frequent coughing spells that rattle her body in her attempts to clear some of the gunk that threatens to clog her lungs. Her lungs are damaged; she has to wear oxygen to help her breathe easier. Wherever she goes, her tanks or portable unit go along for the ride.
Bitsy takes a whole plethora of drugs. They help; sometimes, though, even with all the pills, oxygen, enzyme suppliments, treatments, therapies, etc., she still ends up in the hospital, where doctors and nurses fight to save her life.
We know that, in time, Bitsy's already fragile health will worsen. Right now, though, given all the circumstances, Bitsy continues to do pretty good.
Bitsy is home-schooled while Evie and Happi take the bus to regular school. Bitsy's health is just too precarious to risk yet another lung infection, another hospital stay, so this is why we do this. Winter is the worst time; this is when she seems to be at her sickest or in the hospital the most, more than any other time during the year.
Bitsy is very tiny for her age (hence, her nickname): she is only as tall as a four-year-old, and wears toddler-sized clothing. She is incredibly skinny: no matter how hard we (or she) tries, we (she) can't seem to get any weight on her thin frame. It's extremely frustrating.
It's also tiresome when people move away from her during her coughing spells as though she's carrying the bubonic plague or make rude comments; this is probably the worst time for us in parenting a child like Bitsy.
How often we have to tell people of her condition and especially that she isn't contagious! She tries hard to control her coughing, but is often unsuccessful because she feels the need to cough, which helps clear her lungs, which are often congested with thicker than normal mucus (which is the hallmark of her disease).
Bitsy knows her limits: she's learned to live with her illness. She doesn't like it any better than we do (especially when in the hospital or sick with another infection); she accepts her illness with grace, and has an upbeat attitude; it's amazing to see!
We don't know how much time we have left with our youngest daughter; we intend on making every moment with her count, give her a life she rightfully deserves, a life filled with love, laughter, hope, and above all, joy!
She deserves that, just like any other child!
I will write in here again soon; it's time to start Bitsy's schooling for the day. Until then, this is Barthe St. Clair saying so long, and may God bless you as much as He does us!
~Sincerely, Barthe St. Clair, Palo Alto, California :)
*To be continued.*